6.3 Experiencing Stigma

A Family Guide to Concurrent Disorders - Part II: The impact on family

Stigma by association

Some say that stigma is worse than the disease itself. - Torrey (1994)

We have seen that a combination of biochemical changes in the brain and a wide range of environmental factors can trigger substance use and mental health problems. Yet many people still believe these problems are caused by the behaviours of family members.

Families may be blamed, feared or shunned because of their connection with their relative. Although many parents are reassured when they discover that there are biomedical components to mental health disorders, they continue to feel blamed by society for their relative's problems. Whether families actually experience discrimination or negative attitudes, or fear that they might, the experience can be stressful. Because of the fear of stigma, people tend to hide the diagnosis. They may start avoiding others and live in fear that the illness will be discovered.

Family members experience the effects of stigma in many ways:

• Their social support network may shrink and they may face negative attitudes if they reveal the disorder.
• They may be disappointed by reactions from mental health care professionals and feel alienated from the treatment process.
• They often have to endure the effects of labelling and the visibility of the disorders.
• They may delay getting treatment due to fears of stigma.

As kids, we knew there was something wrong with my mother, but there was never any validation from anyone else about that. We couldn't really tell anybody or go to anybody for help. People that weren't really connected to the family couldn't see what was going on, and so it was just this constant sort of day-in and day-out bizarre inner world that we lived in, that nobody else could really see—and we were alone with it.

Multiple sources of stigma

Multiple sources of stigma increase the risk of mental, emotional and physical health problems. The more visible a person's differences—for example, physical disability, noticeable developmental delay, non-white skin colour, unconventional dress, low English-language proficiency and accents—the less comfortable they are about accessing mental health care.

Isolation

Many people try to protect themselves from stigma by avoiding certain people or situations. However, limiting social interactions can increase loneliness and psychological distress and lead to social isolation. As a result, people may start to think that they are incompetent, strange or otherwise flawed. A reduced social support network may actually lower family members' self-confidence and self-esteem, and they may experience depression. In such cases, people are less likely to seek help.

I guess this has something to do with stigma—that you close out people that you could have counted on—people that you really need. And you end up closing them out only because of the stigma—not because you don't trust them or anything, it's just the stigma. And the risk is huge, so you're closing all the doors. You close the doors to any support link.

Lack of acknowledgment

Families say that health care professionals rarely recognize family members' strengths, value their opinions or acknowledge their efforts to support their loved ones. Family needs are often not considered a priority, and integrated care for mental illness and substance use disorders is not widely available. Family members recount being ignored, patronized and blamed for their loved one's illness. They may feel that they are not being consulted about their relative's treatment.

I have felt resentful for all the years I put in before the illness was diagnosed. How much time and how much agony, and how much worry—because this was a child who was not developing normally, and nobody listened to me! I was so angry over that—and I'm still angry.

Culturally Sensitive Treatment

Treatment programs based on western philosophical values and assumptions may not be helpful for everyone. Family members comment on the lack of culturally sensitive mental health care services and the lack of families from various minority groups in support groups.

People have an opportunity to learn ways of handling problems like stigma, but only if you can actually get people to go to support groups—because that's the other thing—my parents aren't the kind of people to go to these groups. . . . And most of the people in these organizations tend to be Anglo-Saxon, female and mothers of mentally ill people. They're more educated, the kind of people who are likely to do volunteer work, join committees and organizations, and to help counsel others, whereas the average person from some cultures seems to prefer to keep it within the family—to hide the mental illness and the drug problem. They not only have to deal with mental illness—they belong to other ethnic backgrounds, and they may be stigmatized because of that.

Labelling

Some families are reluctant to accept a formal diagnosis because of the potentially devastating effects of labelling. “Schizophrenic” and “drug abuser” are among the most powerful labels. Other diagnoses such as “depression and tranquillizer abuse” and “anxiety disorder with codeine abuse” can be interpreted as meaning that the person is not able to handle everyday stress. Health professionals may not take the symptoms of these disorders seriously and sometimes see these clients and families as “personality disordered” or “attention-seeking.”

A formal diagnosis can be far more difficult to ignore or hide than informal labels. A family member talked about having difficulty in accepting her brother's diagnosis of schizophrenia, preferring instead to believe that his bizarre and unpredictable behaviour was caused only by drug abuse. Others may struggle to accept the reality of the diagnosis.

It really wasn't until he had a full-fledged psychotic episode that we knew it was more than just the drugs. It was different when the diagnosis became one of drug abuse and mental illness. It was really difficult. It was difficult to accept that schizophrenia was a real diagnosis also—it was difficult just to, sort of, rid myself of the feeling that, no, it can't be mental illness. It can't be schizophrenia. I mean, it was that word—just the word, the label itself—that, well, I thought, “That can't be right. It's got to be just, you know, hits of acid,” or whatever. It sounds terrible, but that's what I thought then. So yeah, it was hard to accept, for sure.

When the symptoms are more obvious (e.g., excessive substance use, angry outbursts, talking to oneself), the stigma is usually greater.

There is more stigma, I think, when mental illness is more obvious. People can see it. My daughter told me that she smashed a bottle on the ground two weeks ago. She was walking along, she had a juice bottle, and she just got angry—she was very unstable at that time . . . people do get frightened.

Delayed treatment

When a person receives prompt treatment for concurrent disorders, the course of the illnesses may be changed for the better with greater hopes for recovery. But fear of stigma can discourage families from seeking care for their loved one as well as care and support for themselves.

Stigma can make parents hesitate to go for more help. But who can blame them? It only takes one really bad experience in the health care system and you don't want to go through anything like that again. When my husband and I took our son to a child psychiatrist, he blamed the behaviour on our parenting. Now, that sort of thing, being blamed, being told you have bad parenting skills, prevents many people from seeking needed treatment later. People think, well, there's no use going to those guys for help, they're only going to tell us it's our fault! We went away and never came back. We all just lived with it.

A family member describes the distress she has endured for a number of months over her son's concurrent disorders and his refusal to seek help due to fears of people's negative attitudes.

You know, if you have cancer surgery and you have to take a month off school for that, do you think it would jeopardize somebody's chances of completing their degree? And as his mother, I can't help him—I can't go to bat for him . . . I can't violate my son's privacy and confidentiality. So he's delayed going for help because of what might happen to his job! So, I mean, tell me who would explain it to his supervisor? Give me one person that would do that for him! One person who would say, “Okay, let's really help this guy. Let's go to bat for this kid.”

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